Take part in survey to help the rare disease community

  The National Organization for Rare Disorders (NORD) is conducting a survey to collect data about the diagnosis and care of people with rare diseases. NORD first conducted the survey in 1989 and then again in 2003. This is a follow up survey to help NORD and...

Christmas Jazz raises money for the HPS Network

JoAnn Criblez and The Jingle Boys entertained an audience of HPS Network supporters at Jingles and Jazz, held Dec. 12 at the Tilles Center Atrium, Long Island University Post. The fundraiser to benefit the HPS Network featured a range of holiday favorites, mostly...

Sabrina Sakoda to speak about her work with the film RARE in Japan

Sabrina Sakoda, president and founder of Dream Bridge, will be at the 2020 HPS Network Conference to talk about her work screening RARE around Japan. Sakoda raised the money to have RARE, a documentary about a drug trial to treat Hermansky-Pudlak Syndrome, translated...

Building Your Village: HPS Network Webinar

Save the Date! Aug, 13, 2019 at 8:00 pm ET There are lots of times when those of us impacted by HPS, whether we are people with HPS or caregivers, need our community support systems. They say it takes a village, and we need our villages to help us along the way. This...